Seizures, surges, biting, kicking, screaming. Why. Why is this happening. Make it stop, how do we make it stop. Aubrey has been struggling with some unpleasant developments over the summer and we are in a desperate search for a solution. After we seemed to have the seizures and sleep under control, the manic rages started. The first one that made me realize we needed a neurologist involved was in the aquarium in Las Vegas on our vacation. It was literally like all hell broke loose in front of the jelly fish tank. She just started biting uncontrollably and crying and screaming. Holy $&!?, let's get her out of here. Out the entrance we went in a hurry while she was ripping into Seth's shoulder like a vampire. I don't think either of us could comprehend what we had just experienced. We sat quietly on a bench outside of some bathrooms just trying to process the situation. Five minutes later she was eating a hot dog, happy as could be. Ummm, ok. A week later I was on my way to Fargo with her and it happened again. We literally parked on the side of the rode for almost an hour to let it run its course, while I tried singing, talking, not talking, dodging bites, rocking, taking her for a walk, so on and so forth. Nevermind that I felt like I had just survived an intense battle, how did she feel. It was while I was watching that episode that I knew she couldn't control it. If she wanted to stop it, she couldn't. It was out of her control just as much as her seizures are out of her control. She was hurting herself. She was bleeding. She couldn't stop it. I couldn't stop it. I couldn't help her in that moment. That's a feeling that I do not care to experience often. The neurologist increased Aubrey's meds a bit and ordered an EEG. Ok cool, maybe that'll help. I feel like it helped the way Tylenol helps a migraine. She's had more episodes over the past few weeks with the latest being yesterday during speech therapy. Jeri was with her and by the time they got back to town, Aubrey's arms were swollen, her knees were bruised and her lip was bleeding from all of the biting. It's times like that, that I want to blame someone. As if Aubrey really got so annoyed in speech that she bites hard enough to break skin. That's not true and I know it but it's so easy to want to blame someone else when you don't know how to help your child. I know it must be so unbelievably frustrating to Aubrey because not only can she not control these outburst, she can't tell me how it feels or explain the pain she is experiencing.
I'm still waiting for results from the EEG, longest four day wait ever. I desperately hope the doctor sees a need to change something. Something has to make it better. I can't send her to school like that. I can't introduce more aides and classmates to a situation that I can't even tell them how to control. One step forward, two steps back. Until we have a solution, I will continue to brace for impact every single day.
Update:
I received the results from the EEG a few weeks ago- from two different doctors - and was only told that yes, in fact, Aubrey is having seizures. Yep, I know that doc. Then I was told that if Aubrey was having some sort of other behaviors, I needed to video her and send it in. Pardon me? Is that a joke? My daughter is a danger to herself and others and you want me to relax and pull out my phone and send you a video? I think not. Now, this was all coming from a doctor that does not typically see Aubrey, since her regular neurologist is on maternity leave. Of course, since she is on maternity leave, I was then told that we could not get in to see her until November. NOVEMBER?!?!?! School is going to start and I'm going to have a baby by then. Not going to work. I was beyond frustrated. I knew we had to seek a second opinion. Unfortunately, we live in North Dakota and when you want to question a doctor from Fargo, your options are kind of limited. My first Google search was "top pediatric neurologist in U.S.". I was mad and I was going to find someone I trusted. Then I looked at "UCLA pediatric neurologist". Aubrey had seen a geneticist there before and maybe they had a neurologist that would be helpful. Then I remembered the neurologist that she had seen twice in Las Vegas. At the time, Aubrey didn't have any real neurological concerns so we didn't see her often. She had reviewed an MRI one time just to rule out the atrophy that had been noted early in Aubrey's life and briefly consulted with us on Aubrey's autism, but that had been about it. I remembered that she was leaving the practice she was in before we moved but couldn't even remember her name. Luckily, I was able to find her right away because Las Vegas is a relatively small town despite what it may look like to a tourist. I was a little confused right away because the only current information contact information I could find was from UNLV. Was she a professor now? When did UNLV get a School of Medicine? Anyway, I decided to email her and, surprisingly, had a response the next day. I explained all of Aubrey's troubles and without telling her that I was fed up with the current opinions, told her I was seeking a second opinion. She agreed to see Aubrey and put me in contact with her assistant. Okay, that was fast. Not like here where I'll need to wait until November to speak to someone. Her assistant worked some magic with her schedule set us up with an appointment within a week, so that Aubrey's school schedule would not be disrupted.
Off to Vegas we went to get some answers. It was a quick two day trip but Aubrey was able to get in a full day at the pool. Bonus!! I showed up with all of her records in hand and a video of her most recent EEG - another thing I had to call about 5 times to receive. The doctor, resident and student took time to review the video and read over the records prior to having Aubrey in. This is what Aubrey needed. Someone to actually pay attention and create a plan. She discussed various options with me, reviewed the EEG with me and wrote down her recommendations. We spent about an hour talking and coming up with a strategic path forward. One of her first recommendations is for Aubrey to have gene testing done to see what medications work best for her. Wish I'd known that existed two years ago. After that, I will have to follow-up with the original neurologist out of Fargo for medication adjustments and additions, which will now be in September and not November (another multitude of phone calls), because of the issue of writing prescriptions across State lines. I felt like a ton of bricks had been lifted from me. We have a plan in place and I'm not sitting here spinning my wheels. I felt like finally I had visited with a doctor who saw patients like Aubrey multiple times a day. There was no guessing games. She knew what was up - she's seen it before. Sometimes that's all a mom needs to know. To know that my child isn't the ONLY one out there having these issues. To know that there are many children that are struggling just like she is. Even though I made the decision to give her better quality of life by moving to small town USA, it's okay to travel to see a doctor or two every now and then.
Today Aubrey started 3rd grade. Her team from the school and I were able to sit down earlier this week so they could get caught up on what's going on. For now, I have rearranged some of her meds to hopefully get her through the school day with no extreme aggressive outburst. Day one was a success! My goal is to have it all under control and worked out prior to having a baby, but for now, if I can keep her from spinning out of control from 8:30 - 3:30, I'll take it.
Update:
We are about three months into the school year and I think we have finally found some relief for Aubrey's mind. We have changed meds a few times. The most significant change came from adding Hyrodroxyzine to her list. It is primarily used for anxiety and just seems to calm her nerves. Other significant changes were changing to an extended release version of her seizure meds. I think this has helped with the mood swings, her level of Lamictal should be more consistent now. The other significant change that has been made is that Aubrey is now tablet-less. That's right. No more playing on tablets or phones. It's hard to explain the changes we have experienced with taking it from her. I definitely do not recommend doing it unless you are really ready to dig your heels in and commit. There were several sleepless nights and a lot of crying and biting but after about two weeks, she got used to the idea and no longer asks for it. I do not know where we got so lost in the idea that she could have one non-stop, but somewhere along the line we did. We all did. She loved it so much and the characters on her shows were her friends. It was painful for me to deny her what she considered a relief from reality. She is better for it now though. She does get a little bored on the weekends, especially with the cooler weather and not being able to play outside all day, because she refuses to wear pants. We have tapped into toys that haven't been looked at in years and have come to love the show Dinosaur Train on T.V.
She is still all over the place with her sleep and sleeps anywhere from 6-13 hours a night. I'm almost convinced that has more to do with her needing to go potty in the middle of the night and not being able to go back to sleep or some other typical disturbance that we all experience. She is still on her sleep meds but I'd really like to get those down to a minimal amount, so that she's not so drowsy in the mornings. That will be our next challenge.
All of this goes without saying that Aubrey will probably always have behaviors that I cannot explain or that will at least take me a while to figure out. Just last weekend I thought we were back to square one with the meltdowns after a 45 min screaming and biting session that was horrific. I just wanted to cry thinking that nothing was any better than it had been four months earlier. Come to find out on Monday, she had strep throat. She was just in pain. Well, not JUST, but at least it was an easy fix. After she refused breakfast almost completely that Monday morning, I took her in to see the doctor just to confirm that she didn't have an obvious medical condition. What a relief to know that she only had strep throat.
After many months of wishing I could ease the chaos in her brain and help her to be safe from her own actions, I think we are on a good track and I see a lot of improvement. I am so very hopeful that the new baby does not throw her into a tailspin and she is able to accept him and find him interesting.
